LUGANO, Switzerland - A study that looked at mainstreaming genetic counselling for ovarian cancer to support screening programmes in Malaysia was presented at the ESMO Asia 2017 Congress. (1) The preliminary results of the MaGiC study show that most patients counselled by a well-trained but not necessarily an expert in genetics were satisfied or just as satisfied with their experience as compared to those being counselled by a genetic counsellor or clinical geneticist.
One in nine ovarian cancer patients carries the BRCA1 or BRCA2 (breast cancer gene 1 or 2) mutation and four in 10 carriers do not have a family history of breast or ovarian cancer. (2) Knowing one’s BRCA status may indicate how one may respond to certain therapies or the level of risk to develop certain cancers.
“In the past, genetic testing in ovarian cancer was limited to a small number of patients with the aim of identifying relatives at risk,” said Dr Soo Chin Lee, Senior Consultant, National University Cancer Institute, Singapore, commenting on the study. “Now that there is a drug to treat cancer patients with BRCA mutations, genetic counselling and testing is recommended for all patients with epithelial ovarian cancer. This has increased the number of patients who qualify for testing and thus specialised centres have become overloaded.”
The MaGiC study was designed to assess the prevalence of germline BRCA1 and BRCA2 mutations among ovarian cancer patients; determine the feasibility of mainstreaming genetic testing and counselling at local hospitals; examine the psychosocial impact of genetic testing in Malaysia.
800 ovarian cancer patients are to be recruited over a two-year period. Basic genetic counselling workshops have been held for 70 non-genetic clinicians from 29 hospitals across Malaysia. According to the study protocol, patients are allocated to counselling by a trained non-genetic clinician in their local hospital in a clinical programme led by Professor Yin Ling Woo, MaGiC’s lead clinician, or to counselling by a genetic counsellor or clinical geneticist in a programme with Professor Meow Keong Thong, lead clinical geneticist at specialised centres in Kuala Lumpur.
All blood samples were analyzed for BRCA mutations by Cancer Research Malaysia, coordinated by diagnostic lead Dr Joanna Lim. Patients received pre-test counselling, followed by test results and post-test counselling. After both pre- and post-test counselling, they are interviewed by a researcher over the telephone to assess the feasibility and the psychosocial impact of the experience.
One year into the study, 248 patients have been recruited, of whom 208 received genetic testing and 13% (27) had BRCA mutations, which is similar to that found in other populations.
“Screening for BRCA1 and BRCA2 mutations and providing genetic counselling in local hospitals could help identify mutation carriers who may benefit from risk management and targeted treatment,” said lead author Ms Sook-Yee Yoon, genetic counsellor, Cancer Research Malaysia, Subang Jaya, Malaysia. (3,4) “In Malaysia, BRCA genetic testing and counselling is only available at specialised centres in Kuala Lumpur but most people live outside the capital: patients seem to prefer local appointments, so if they are referred to another centre for genetic counselling, they seem less likely to attend. ”
Preliminary results show that the answers to the psychosocial surveys were similar between the two groups. Most patients were satisfied with their counselling experience, felt informed about their choices, and found it easy to decide to go ahead with genetic testing.
In terms of feasibility, patients in the local and specialised counselling arms were equally satisfied or very satisfied with the counselling they received. The local counselling arm has been recruiting patients more quickly than the specialised arm.
“Cancer is still a taboo subject in Malaysia and there is a fatalistic attitude to hereditary conditions,” continued Yoon. “Genetic information can cause conflict in families and the data we are collecting on the psychosocial impact of genetic testing will provide insights into the psychosocial challenges. With this knowledge, we can focus on interventions to overcome these challenges.”
“Mainstreaming genetic testing and counselling to local hospitals is a strategy to cope with this increased volume of patients,” continued Lee. “This is ideal for a large country like Malaysia where specialised centres are concentrated in the capital yet the majority of the population live elsewhere. Lee said: “The preliminary results of the study show that moving the genetic counselling process to the community is feasible and could be rolled out across Malaysia. It also is a model for other countries like Singapore to follow.”
Notes to Editors
Please make sure to use the official name of the meeting in your reports: ESMO Asia 2017 Congress
- Abstract LBA4_PR ‘Mainstreaming Genetic Counselling for Genetic Testing of BRCA1 and BRCA2 in Ovarian Cancer Patients in Malaysia (MaGiC Study)’ will be presented by Sook Yee Yoon during Proffered Paper session 2 on Saturday, 18 November 2017, 10:45 to 12:30 (SGT) in Hall 405. Annals of Oncology, Volume 28, 2017 Supplement 10.
- Fong, F. (May 29, 2016). Genetic testing for ovarian cancer. New Straits Times. Retrieved from: https://www.nst.com.my/news/2016/05/148430/genetic-testing-ovarian-cancer
- In people with BRCA1 and BRCA2 mutations, DNA damage may not be repaired properly. Inherited mutations in these genes increase the risk of ovarian cancer.
- About 90% of ovarian cancers develop in the epithelium, which is a thin layer of tissue covering the ovaries. Non-mucinous ovarian cancer is one type of epithelial ovarian cancer.
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Mainstreaming Genetic Counselling for Genetic Testing of BRCA1 and BRCA2 in Ovarian Cancer Patients in Malaysia (MaGiC Study)
S.Y. Yoon1, N.S. Ahmad Bashah1, S.W. Wong1, S. Mariapun2, T. Hassan1, H. Padmanabhan1, J. Lim2, S.Y. Lau2, N. Rahman3, M.K. Thong4, G.S. Ch'Ng5, S.H. Teo2, E. Bleiker6, Y.L. Woo7
1Familial Cancer, Cancer Research Malaysia, Subang Jaya, Malaysia, 2Breast Cancer Programme, Cancer Research Malaysia, Subang Jaya, Malaysia, 3Division of Genetics and Epidemiology, Institute of Cancer Research, London, UK, 4Department of Paediatrics, University Malaya Medical Centre, Kuala Lumpur, Malaysia, 5Genetics Department, Hospital Kuala Lumpur, Kuala Lumpur, Malaysia, 6Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amstredam, Netherlands, 7Department of Obstetrics and Gynaecology, University Malaya Medical Centre, Kuala Lumpur, Malaysia
Background: Identifying germline BRCA mutations in ovarian cancer patients is important for the medical management of patients and risk management for relatives. In Asia, genetic services are relatively inaccessible mainly due to the lack of genetic counselling. Mainstreaming improved access to cancer genetic testing in United Kingdom, hence its feasibility is being tested in Malaysia. The MaGiC Study aims to (a) determine the prevalence of germline BRCA1 / BRCA2 mutations in a population-based cohort (b) determine the feasibility of mainstreaming genetic counselling and testing and (c) investigate the psychosocial impact of genetic testing in Malaysia.
Methods: This is a prospective observational study of 800 patients with non-mucinous ovarian cancer irrespective of family history, recruited via a mainstreaming pathway where patients are counselled by non-genetic clinicians or the traditional genetics pathway. Phone interviews are conducted after pre-test counselling and result disclosure to study feasibility and psychosocial impact using Genetic Counselling Satisfaction Scale (GCSS), Decisional Conflict Scale (DCS), Psychosocial Aspect of Hereditary Cancer (PAHC) and Cancer Worry Scale (CWS).
Results: 70 clinicians from 29 sites nationwide recruited 248 patients. 208 patients were tested. 27 (13%) pathogenic mutations, 33 (16%) variants of uncertain significance and 148 (71%) negatives were identified. Analysis of 160 patients showed that GCSS, DCS, PAHC and CWS were reliable. Most patients were satisfied with their counselling experience, not conflicted in making decision, felt informed about their choices. PAHC showed that 79% patients at pre-test and 69% at post test had a problem mainly on ‘living with cancer’. Distress Thermometer showed 41 of 158 (26%) patients may require psychosocial support at pre-test but reduced to 17% after result disclosure. For CWS, 64 of 156 (41%) patients at pre and 26 of 64 (41%) at post-test reported to have frequent concerns about getting cancer again.
Conclusions: Mainstreaming may improve access to cancer genetic testing regionally. Interim results from this study will demonstrate the challenges and the feasibility of introducing mainstreaming cancer genetics in Malaysia.
Legal entity responsible for the study: Cancer Research Malaysia
Funding: Cancer Research Malaysia and Astra Zeneca
Disclosure: S.Y. Yoon: This study is funded by Cancer Research Malaysia and with an Investigator Initiated Grant from Astra Zeneca. Ms Yoon has received honorarium as invited speaker by Astra Zeneca.
N. Rahman: Non-executive director of Astra-Zeneca. M.K. Thong, S.H. Teo: Honorarium as speaker from Astra Zeneca. Y.L. Woo: Honorarium as a speaker by Astra Zeneca. All other authors have declared no conflicts of interest.
Keywords: BRCA1/2, genetic counselling, ovarian cancer, mainstreaming cancer genetics